Day 9: Colby Wren – One of the MANY Faces of Mitochondrial Disease

Mitochondrial disease is a complex, underdiagnosed disease that may appear anytime – at birth, in the teen years or, as an adult. The disease can attack at any age and has links to other more familiar disorders: Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease (ALS), muscular dystrophy. We’re learning it’s not at all rare. But, due to a lack of physician and public awareness, mitochondrial disease is not often diagnosed.

Colby Wren {One Face, One Story}

Some of you may already know Colby from Hope Flies Home Run Challenge, Hope Flies with the Braves or even the special featured on CNN.

From the outside, you would never know that Colby has mitochondrial disease. When he practiced and played football games, he would get sick during and after each. Now that he’s been diagnosed, he knows mitochondrial disease is just something in his life he has had to learn to manage on a daily basis.

Colby and Fans at Hope Flies Home Run Challenge

Physically, Colby was never in better shape than when he first started sports training. My body took the initial training really well, but after the first year it really took a toll. I began getting many of symptoms of mitochondrial disease, which I had neglected noticing.

Needless to say, when the season ended and he had the opportunity to rest, he did so freely. Checkups and blood work during the times of high activity had very negative numbers when it came to my mito metrics, but Colby noticed that other areas my body was thriving because he was in great shape. The same cycle occurred his second year playing baseball at Georgia Tech: get in great shape, hit a wall, and that year his grades hit an all-time low. Georgia Tech is challenging enough when you are just a student there, but when you are a student with incredible mental and physical fatigue, those calculus classes and science classes can be ruthless. Falling just under a 3.0 my freshman year, my sophomore year was very lackluster and I struggled to recall almost anything that I studied for. This is when I knew a change needed to occur.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

While Colby was passionate baseball, meeting with his doctor during his last semester playing gave him some incredible insight and pause. Colby’s body, though in shape, was not as healthy as he needed it to be. But when you’re given options to continue playing a few years versus being able to be healthy and active for your future generations it is a very simple decision. Colby immediately gave his body lots of rest and neglected his health, which was the most important in the long run.

Colby is currently an Ambassador for the Foundation for Mitochondrial Medicine and sharing his story to help us raise awareness and fuel connections. Colby is an active part of our Hope Flies events in the Atlanta area.

Colby has been an inspiration to many others affected by mitochondrial disease and even called a “hero” by one mito mom!

40 Days of Glow: Day 10 – Colby Wren, One of the Many Faces of Mitochondrial Disease

Mitochondrial disease is a complex, underdiagnosed disease that may appear anytime – at birth, in the teen years or, as an adult. The disease can attack at any age and has links to other more familiar disorders: Autism, Parkinson’s, Alzheimer’s, Lou Gehrig’s disease (ALS), muscular dystrophy. We’re learning it’s not at all rare. But, due to a lack of physician and public awareness, mitochondrial disease is not often diagnosed.

Colby Wren {One Face, One Story}

Some of you may already know Colby from Hope Flies Home Run Challenge, Hope Flies with the Braves or even the special featured on CNN.

From the outside, you would never know that Colby has mitochondrial disease. When he practiced and played football games, he would get sick during and after each. Now that he’s been diagnosed, he knows mitochondrial disease is just something in his life he has had to learn to manage on a daily basis.

Colby and Fans at Hope Flies Home Run Challenge

Physically, Colby was never in better shape than when I first started sports training. My body took the initial training really well, but after the first year it really took a toll. I began getting many of symptoms of mitochondrial disease, which I had neglected noticing.

Needless to say, when the season ended and he had the opportunity to rest, he did so freely. Checkups and blood work during the times of high activity had very negative numbers when it came to my mito metrics, but Colby noticed that other areas my body was thriving because he was in great shape. The same cycle occurred his second year playing baseball at Georgia Tech: get in great shape, hit a wall, and that year his grades hit an all-time low. Georgia Tech is challenging enough when you are just a student there, but when you are a student with incredible mental and physical fatigue, those calculus classes and science classes can be ruthless. Falling just under a 3.0 my freshman year, my sophomore year was very lackluster and I struggled to recall almost anything that I studied for. This is when I knew a change needed to occur.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

If Colby was a baseball star with all of the talent in the world, he might have thought twice about the decision to stop playing baseball. Meeting with Dr. Shoffner during his last semester playing gave me some incredible insight. Colby’s body, though in shape, was not as healthy as he needed it to be. But when you’re given options to continue playing a few years versus being able to be healthy and active for your future generations it is a very simple decision. Colby immediately gave his body lots of rest and neglected his health, which was the most important in the long run.

Colby is currently an Ambassador for the Foundation for Mitochondrial Medicine and sharing his story daily to help us raise awareness and fuel connections. Colby helped us launch the Hope Flies Home Run Challenge in 2012 and has been an active part of our Hope Flies events in the Atlanta area.

Colby has been an inspiration to many others affected by mitochondrial disease and even called a “hero” by one mito mom!

Get Your Glow On: Share Colby’s Story with your network of friends to help us raise awareness and give hope to so many battling mitochondrial disease daily.

Hope was Flying at Turner Field!

On Saturday July 26th, members from Georgia’s Parkinson’s Coalition welcomed nearly 100 guests at Turner Field for the Second Annual Hope Flies with the Braves. Guests were welcomed by FMM Ambassador, Colby Wren, and enjoyed the 5-3 Braves win over the Padres. Connections were made among new and old friends to help raise awareness for mitochondrial disease and the many related diseases. A special thanks to Heritage Bank – The Albright Mortgage Team, Terri and Frank Wren, Dawn and Will Brown, Christopher Bennecchi and Linda and Nathan Bennett for sponsoring this year’s event. The Georgia Parkinson’s Coalition includes: The Foundation for Mitochondrial Medicine, Wilkins Parkinson’s Foundation, Team Cantore and the Georgia Chapter of the American Parkinson’s Disease Association (APDA), all of whom are collaborating to raise awareness for Parkinson’s and mitochondrial disease. According to the CDC, 1 in 500 people are affected by Parkinson’s and 1 in 2,500 people are affected by mitochondrial disease. Mitochondrial dysfunction, a cellular energy deficiency problem, is at the root of both diseases. Collaboration among organizations like these can speed the cures for both diseases. About the Foundation for Mitochondrial Medicine (FMM): The Foundation for Mitochondrial Medicine’s mission is to support the development of the most promising research and treatments for the many forms of mitochondrial disease. Cures for mitochondrial diseases could impact cures for Autism, Alzheimer’s, Parkinson’s, and Lou Gehrig’s disease among others. For more information on FMM funded research such as testing of new drug compounds and functional MRI studies on cognitive fatigue, visit www.mitochondrialdiseases.orgAbout Wilkins Parkinson’s FoundationWilkins Parkinson’s Foundation (WPF) is dedicated to accelerating the cure and treatment of Parkinson’s Disease. Our strategies include directing funds to research, education and awareness, working to increase collaboration between other PD nonprofits, and advocating on behalf of the entire Parkinson’s community. http://www.wilkins-pf.orgAbout Team CantoreFounded in 2000, by Tamra Cantore, not long after her diagnosis of Parkinson’s Disease at the age of 40, the mission of Team Cantore is to increase awareness of the changing faces of Parkinson’s, as well as the need for increased funding for research. Research is the only way we will slow the progression of this disease and, ultimately, find a cure. http://www.teamcantore.orgAbout APDAThe American Parkinson’s Disease Association was founded in 1961 to “ease the burden and find a cure” for Parkinson’s disease. The organization focuses its energies on research, patient services, education and raising public awareness about the disease. http://www.apdageorgia.org

How Do You Increase Your Energy Levels?

Whew it’s been a long week! I received many comments, emails, and Facebook messages since my first blog post, and many of them had to do with mito test results. I thank you for asking those questions. It became very evident to me that I am in no way able to actually answer them professionally.

As many of you have experienced over the years, finding a doctor who knows what mitochondrial disease actually is can be difficult. Mito has so many “faces” and a wide spectrum of complications that make it hard for those not specialized in the diseases to keep up. That is why awareness is such an important part FMM, because without it how will we ever grow large enough to make mito mainstream? This week I dive into what I’m doing to help increase my energy levels.

My second week of this journey has taken me out of my comfort zone with food and exercise. I am trying to find the happy medium between getting back in shape and keeping my body safe. I have gone back to square one physically. This has allowed me to schedule out my first few weeks of exercise meticulously with an emphasis of slowly getting back in the swing of things. I then assessed my current diet and realized it was not giving me the maximum amount of energy that I could process on a daily basis. So, I have been looking for more vibrant colored fruits and vegetables and trying to have at least one meal a day with dark leafy greens. This seems to have given me rocket fuel. I feel so much better every day that I eat like this, which is a wonderful reminder to stay away from fried junk. If you have the option to choose what goes in your body, then I highly suggest talking with your doctor about seeing a nutritionist that your doctor trusts for your well-being.

Some weight is starting to fall off and it is a welcoming sight for me. Healthwise, my body won’t be carrying around any additional weight and I should have much more energy. I often wonder how much added strain this weight is causing my body that already has low energy levels. In the long run, I know I will be much better off and that is what drives me. The summer heat will certainly be a test of its own as I have never responded well to heat and am very prone to over-heating.

How are some of you trying to increase your energy levels? The mito cocktail (i.e. Coq10/L-carnitine, etc.) can only do so much, but along with an energy and nutrient-rich diet and moderate exercise I have noticed some positive changes in my energy levels.

Reach out to be by leaving a comment below, or follow me on Twitter at @mitoguygt.

My Journey with Mitochondrial Disease – Colby Wren’s Story

This blog is from guest blogger and FMM Ambassador, Colby Wren. Colby will be a regular blogger for The Firefly. We hope you enjoy his story and journey.

Hello many of you know me from my CNN special or from Georgia Tech baseball. I wanted to take a chance to update you on my life and what I am currently doing. While I played baseball at Georgia Tech, I was asked time and time again how I managed it all physically on the field and mentally in the classroom.

Physically, I was never in better shape than when I first started training. My body took the initial training really well, but after the first year it really took a toll. I began getting many of symptoms of mitochondrial disease, which I had neglected noticing.

Needless to say, when the season ended and I had the opportunity to rest, I did so freely. My checkups and blood work during the times of high activity had very negative numbers when it came to my mito metrics, but I noticed that other areas my body was thriving because I was in great shape. The same cycle occurred my second year playing baseball: get in great shape, hit a wall, and that year my grades hit an all-time low. Georgia Tech is challenging enough when you are just a student there, but when you are a student with incredible mental and physical fatigue, those calculus classes and science classes can be ruthless. Falling just under a 3.0 my freshman year, my sophomore year was very lackluster and I struggled to recall almost anything that I studied for. This is when I knew a change needed to occur.

Colby and fans at family day for Hope Flies Home Run Challenge.

If I was a baseball star with all of the talent in the world, I might have thought twice about my decision to stop playing, but because I know my future would always be brighter in the business world. I knew I had to make my future my focus. Meeting with Dr. Shoffner my last semester playing gave me some incredible insight. My body, though in shape, was not as healthy as I needed it to be. But when you’re given options to continue playing a few years versus being able to be healthy and active for your future generations it is a very simple decision. I immediately gave my body lots of rest and neglected my health, which was the most important in the long run.

This blog I will be writing bi-monthly will go into how I am getting back on the horse so to speak physically with very specific workouts tailored to my body and it’s thresholds as well as a very nutritious LIFESTYLE not a diet.

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

For those of you wondering how I have been for the past 1.5 years here is a glimpse. The day I stopped playing was a hard one, but the 3 semesters of Dean’s List and over a 3.5 GPA have given me great hope and pride that I made the right decision after all. In that time, I got bored standing still so I found something that interested me and sunk my teeth into Internet Marketing. I co-founded No Hats Marketing LLC with my business partner Brent Johns.

If you have any questions for me leave them in the comments below, or follow me on Twitter at @mitoguygt.

Katie Parsons, a 6th Grader Working to Fund the Cures for Mitochondrial Disease!

Meet Katie Parsons, an engaging 11-year-old girl from Marietta, Ga. Katie is an outgoing, happy 6th-grader that loves riding and jumping horses. She has also recently started as a percussionist. Katie is also very excited to earn her babysitter and CPR certificate because she loves taking care of others, especially little kids. In many regards, Katie is just like her classmates, except that she has mitochondrial disease.

Katie was born healthy at 7 pounds 11 ounces. Her health was fine her first few weeks, but then she started having issues with reflux. At 6 weeks, she saw her first specialist – a gastroenterologist. As the reflux worsened she began to not eat and she developed torticollis and plagiocephaly. Even at this early age, she knew that eating caused her pain, so she had to have an NG tube to help her from losing further weight. This was just the beginning of many ER visits and hospitalizations.

It was not until an ER visit where her blood sugar was in the 30s that Katie’s parents began to get the feeling that something was very wrong. Katie began crying from excruciating pains in her legs and began falling. The family began a journey with specialists included endocrinologists, geneticists, allergists and nutritionists. Katie was hospitalized many times due to illness, blood sugar fluctuations and respiratory issues. Her parents were scared and felt helpless knowing something was wrong, yet they still had not received a concrete diagnosis.

Katie’s parents took her to Dr. John Sladky, a neurologist who conducted an EMG and confirmed Katie’s myopathy. Dr. Sladky was the first specialist to mention mitochondrial disease. From that appointment, Katie went to Dr. John Shoffner, a leading mitochondrial expert and researcher. A muscle biopsy with Dr. Shoffner confirmed Katie’s mitochondrial disease, Complex 1 and 3. After starting a regimen of medications, her symptoms started to improve.

Through the next several years, Katie’s condition has constantly evolved through highs and lows. Additional medications help make dramatic improvements, and then other health issues develop, such as cerebral folate deficiency, asthma, lactic acidosis and migraines. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing can be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to run.

Katie is now a young philanthropist and raises funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 sno cones for FMM!

Katie, Colby and Friends enjoyed the afternoon at Turner Field for Hope Flies with the Braves.

This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Atlanta Braves game and represented the Foundation for Mitochondrial Medicine at the Foundation’s first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren.

Hope Flies with the Braves

On July 28, 2013, the Foundation for Mitochondrial Medicine held their first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. The FMM staff and volunteers welcomed all the families, and everyone enjoyed making connections with old and new friends and sporting their Hope Flies Athlete t-shirts and Hope Flies temporary tattoos.

After the pre-game festivities, the group headed to their seats to cheer on the Braves. Marietta resident Katie Parsons was selected from the Hope Flies with the Braves attendees to call out the official “play ball” just before the first pitch and represented the Foundation for Mitochondrial Medicine! Katie, age 11, has complex 1 and 3 mitochondrial disease among other medical issues. She is a bright and happy girl and was delighted to make the “play ball” call and was excited about being featured on the Braves jumbotron screen.

Katie Parsons yelling “play ball” at the Hope Flies with the Braves Family Day at Turner Field.

To view more pictures from this year’s Hope Flies with the Braves, click here.

What is a hero?

What is a hero? According to Merriam Webster, a hero is a mythological or legendary figure often of divine descent endowed with great strength or ability. I think most people toss this word around quite loosely, without really understanding its meaning. In today’s world finding a hero for your child to look up to is quite difficult. To be honest, nearly impossible.

When we were first told our daughter, Audrey, had Mitochondrial Disease it felt like we were kicked in the gut. While we waited for the results of her muscle biopsy we had nearly convinced ourselves nothing would come of it. I remember asking several times, “so she does have mitochondrial disease”? Our practitioner then shared with us an example of a patient with Mitochondrial Disease. She told us about Colby Wren.

Now, to be honest, I don’t know Colby Wren. But I do know that Colby Wren has made an impact for our family. We used Colby’s story of perseverance as a platform when we shared the news of Audrey with family and friends. When I worry about Audrey, because that’s what parents do, I think of Colby. I often say to myself, if Colby has done what he does, then Audrey can do this too. Colby is a great example of physical and mental strength and ability. Colby is legendary with our family. I guess this makes Colby a hero. Thank you Colby for giving my daughter someone who she can look up to and is mother approved!

Georgia Tech and the Home Run Challenge for Mitochondrial Disease

Hope Flies Home Run Challenge

In 2012, the first Home Run Challenge from the Foundation for Mitochondrial Medicine was put in to place for the Georgia Tech Jackets’ baseball team. Individuals, families, and students were asked to make a donation per home run. Sponsor levels range from $1 per home run to $100 per home run, with Corporate sponsorships available as well.

2013 Home Run Challenge

The Georgia Tech baseball team has teamed up with the Foundation for Mitochondrial Medicine and will be supporting the treatments and research for mitochondrial disease. The FMM will have a booth on the concourse at the following games:

Colby Wren and the Georgia Tech Baseball Team

During the Georgia Tech baseball season, individuals, families and corporate sponsors can donate for each home run to support treatments and research for FMM. There also will be a bonus funding opportunity for corporate sponsors to support any grand-slam home runs achieved through the Georgia Tech Jackets baseball season with a higher level of commitment.

Team Colby

Colby Wren, an ambassador for the FMM, lives daily with mitochondrial disease. Colby wants to put his own personal fight with this disease into action to raise awareness, funds, and fuel connections by introducing “Hope Flies Home Run Challenge” during the Georgia Tech baseball season.

Last year, almost $15,000 for mitochondrial research was raised, along with raising awareness and funding for the most promising cures and research for mitochondrial disease.

You can hear Colby before every home game this year on Wrek Radio, discussing the newest information in the mito world, as well as a quick overview of the opposing teams.

If you’d like to listen to the radio broadcast you can check it out HERE.

GEORGIA TECH BASEBALL PARTNERS with Foundation for MITOCHONDRIAL MEDICINE for HOPE FLIES HOME RUN challenge

ATLANTA, March 7, 2013 – The Georgia Tech Yellow Jackets baseball team is again partnering with the Foundation for Mitochondrial Medicine for the annual Hope Flies Home Run Challenge, inspired by former Jackets baseball team member Colby Wren. For every home run the Jackets hit during the 2013 season, supporters can make a donation from $1 up to $100 or more per home run with all proceeds benefitting the Foundation. The Jackets and supporters raised $15,000 in 2012 through the Hope Flies Home Run Challenge and organizers hope to raise even more this season.

Colby Wren, a Georgia Tech junior, played with the Jackets his freshman and sophomore seasons. His twin brother Kyle currently plays baseball for the Jackets. Colby was diagnosed with mitochondrial disease in his early teens and has to manage the disease’s affects on his health every day. As an ambassador for the Foundation for Mitochondrial Medicine, he is eager to raise awareness of the disease, so that the increasingly numbers of diagnosed individuals — 1 in 2,500 and growing — can get treatments. Currently, there are no treatments available.

Mitochondrial disease is an energy production problem that primarily affects the muscular and neurological systems. Mitochondrial are the “power plants” that produce the body’s essential energy and when they don’t function properly, the body can have a “power failure.” There is a graduation of affects – ranging anywhere from a “brown out” to a fatal “black out” – and no two people diagnosed with mitochondrial disease have the exact same symptoms. Mitochondrial dysfunction is at the crux of many common diseases including Autism, Alzheimer’s, Parkinson’s, ALS, and chronic fatigue, and research and treatments for mitochondrial disease could help in treatments for these other diseases.

Individuals or corporations can donate $1, $2, $5, $10, $20, $50 or $100 per home run. The Foundation will have an information and donation table at home games: Saturday, March 16, 4pm game vs Boston College; Saturday, April 20, 6 pm game vs. NC State; and Sunday, May 5, 1 pm game vs. Coastal Carolina.

“Colby’s passion to educate others about mitochondrial disease and the importance of finding a cure can translate into significant funds raised,” said Laura Stanley, executive director for the Foundation for Mitochondrial Medicine. “The Hope Flies Home Run Challenge is a fun way to get involved, support a great college baseball program and help the team hit one out of the park to beat mitochondrial disease.”

“I’m happy that Jackets baseball is partnering again with this important fundraiser,” said Colby Wren. “The team is an extended family to me and it’s great to know they are supporting the fight against mitochondrial disease.” In addition to the fundraiser, the Foundation and Jackets baseball will host families with children diagnosed with mitochondrial disease at the Sunday, May 5, 1 pm home game versus Coastal Carolina. To find out more about the Hope Flies Home Run Challenge and to make a donation online, visit http://bit.ly/HomeRunChallenge .

About the Foundation for Mitochondrial Medicine

The Foundation for Mitochondrial Medicine is a 501(c)(3) non-profit organization dedicated to supporting the development of the most promising research and treatments of the many forms of mitochondrial disease. Visit www.mitochondrialdiseases.org for more information.